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Friday, October 2, 2009

Happy Birthday / Cure JM Awareness Day

My Love:

Most years you ask me not to buy you anything for your birthday. This year, I listened.

However, I couldn't let this one pass quietly.

Seven years ago today, we got the news that our sweet little girl had juvenile dermatomyositis, a strange disease neither of us had ever heard of then and most people still haven't heard of today. It was an odd birthday gift for you, but a gift nonetheless. Although we quickly learned that it had no cure, we welcomed the fact we finally knew what was making her so ill and that there were ways it could be treated.

Since then, you have worked tirelessly to raise awareness of all the juvenile myositis diseases and raise funds to find a cure for them. I marvel at (and am jealous of) how dedicated you are and how good you are it.

However, this is your birthday. You deserve a day off.

So, for your gift, a bunch of my blogmates volunteered to spread the word for you on this day. Each has posted a piece about our struggle with getting Thing 1 diagnosed in hope of raising awareness of this rare autoimmune disease and the need to find a cure for it.

Happy Birthday to Not Always Home and Totally Cool! I am cash free right now, just getting my feet under me in freelance, but I will post about you today, even though I am no Ernest Hemingway, and add a link to my sidebar for donating. I love it when people use blogs for stuff like this. Very "New World."

Such an utterly fantastic birthday gift for your wife, Kevin. Thank you for allowing us this small peak into your life. You two are truly making a difference and I am glad to be able to help, even in such a small way.

Came here from the Stiletto Mom herself - I had never heard of it and I commend you for your efforts. From one "special needs" parent to another, it is a tough world we live in but our children make it so much better!! I will repost for you on FB.

Wow, just read your family's incredible story over at Anna's place. Thank goodness your daughter was properly diagnosed in time. And thank you for spreading the word, a wonderful tribute to your wife and little girl. love your blog title. off to read more home and uncool...best to you and your family!

My best friend has this disease (it is in remission now) and has had it since she was about 2 years old. She is now 43, and doing well she even has a son (who is 22)which she was never suppose to be able to have.